Neuromuscular Retraining and Botox

MADISON - Singing, speaking, smiling and closing her eyes - these are some of the movements controlled by facial muscles that Casey Niesen took for granted before she was affected by facial paralysis.

"The face is the mirror of the soul, "says the now 60-year-old Green Bay resident who developed Bell's Palsy, a condition in which damage to the facial nerve occurs, when she was 50. "It was devastating not to be able to reveal my emotions and feelings through my face."

The initial paralysis affected Niesen's speech and made it difficult for her to form the consonants "p" and "f".

"The right side of my face felt heavy and tense," explains Niesen. "I couldn't completely close my right eye for nine months."

Niesen was one of approximately 15 percent of those who don't recover from Bell's Palsy, which afflicts about 40,000 Americans each year. Within a few months of being diagnosed, she would go on to develop synkinesis, which is the abnormal contraction of one muscle when a different muscle is voluntarily contracted. This condition, due to abnormal healing of the facial nerve, would make nonverbal communication like smiling a challenge for the former teacher.

On the recommendation of someone from Green Bay, who had been treated for Bell's Palsy previously, Niesen sought help from UW Health facial retraining specialist, Jackie Diels, OT, in Madison.

"I was desperate," recalls Niesen, who at that time found her mouth pulled downward when she tried to smile. "If it wasn't for Jackie's empathy and listening skills, I wouldn't have gotten through it."

Facial Paralysis

Diels says most new patients don't have any idea how their facial muscles work. "If the wrong muscle pulls, you get the wrong facial expression," explains Diels. "It's like stepping on the brakes in your car and having your windshield wipers come on."

Diels says her job is to help the patient re-learn how to create the appropriate expression.

"I have a patient look in the mirror while I help walk him/her through the movements to bring about the desired expression," the therapist says. "It's about helping the patient relax the muscles that are overworking due to the synkinesis."

"The first time I worked with Jackie, I moved the right corner of my mouth a little bit with her instructions," says Niesen. "I cried. It was the first time anything had moved on the right side of my face in months."

"Although it's not a cure," says UW Health oculoplastic specialist Mark Lucarelli, MD (pictured). "Botox has been used effectively to help patients like Casey who have synkinesis from Bell's Palsy, or other muscle disorders from conditions such as acoustic neuroma, shingles or traumatic injury. Botox temporarily paralyzes abnormal muscle contractions and improves muscle movement patterns. When the drug is used in conjunction with neuromuscular re-training, a patient doesn't have to work as hard to achieve the desired expression."

Dr. Lucarelli, Jackie Diels and former UW ophthalmology resident Sonja Wamsley, MD, MPH, presented a paper detailing their work with neuromuscular retraining and Botox injections at the association for Vision in Research and Ophthalmology (ARVO) conference in 2001 and the American Society of Ophthalmic Plastic and Reconstructive Surgery (ASOPRS) meeting in 2002.

"Many of the facial paralysis patients I see have been told that nothing could be done to help them," Dr. Lucarelli explains. "The purpose of our presentation was to make physicians more aware of the benefits of neuro-muscular retraining and Botox injections for people suffering from facial paralysis."

Dr. Lucarelli says a number of patients reported that Botox offered them "a window of opportunity to be relieved of abnormal contraction of a particular facial muscle while they practiced techniques of inhibiting other problem muscles."

Casey Niesen has been taking advantage of the "window of opportunity" three times a year for the past nine years.

Prior to her Botox injections, Niesen visits Diels for a facial muscle evaluation. Niesen then received her injections from Dr. Lucarelli at the University Station Clinic in Madison. During her treatment in April 2004, Dr. Lucarelli injected three of Niesen's facial muscles: the platysma (neck), mentalis (chin) and orbicularis oculi (eye) because of contractions in these muscle areas. The right side of Niesen's face is more relaxed now; she can form her sounds and her eye doesn't contract each time she smiles. She can also smile - but it's not a full smile like before the Bell's Palsy.

"I feel confident with Dr. Lucarelli's care, and I would certainly recommend this treatment to other people with this problem," says Niesen. "This is one thing that I've done that gives some comfort and relief from the effects of abnormal muscle contractions."

After nine years of traveling to the Madison clinics, Niesen says she will continue to make the trip to see Diels and Dr. Lucarelli.

"Jackie and Dr. Lucarelli are a good team - they work hand-in-hand to provide the best treatment for my individual situation," Niesen says.

Her treatment has allowed Niesen to continue singing - but not in solo roles in musicals or plays where all eyes would be on her. "I'm still not able to show full emotion," she says.

However, she does sing masterpieces with the 150-member Dudley Birder Chorale, an audition-only group in Green Bay that performs at St. Norbert College in De Pere and the Weidner Center in Green Bay.

"My appearance is much better and my face is more relaxed since the Botox injections," Niesen says. "I feel grateful about how far I've come."